Talking to Dr.Bragg this morning (Thurs) at the Appt which went OK (admittedly I was praying there would be some simple answer to these pressure symptoms though don't know what that would have been) but as usnoftenbthe case no such case. As Dr.Bragg said and I am grateful to her for (my indirectly quoting) 'We'll keep trying, we'll figure it out, we always do' - I pray we do. It's so classic pressure symptoms and yet when she tapped both shunts she was able to get a little fluid off each. Not a lot but that is it seems likely bc they are draining.
I honestly don't know, the relief was temporary and symptoms back by last night but sometimes even that 1/2 a day is like a reset on other symptoms. I woke up around 3 last night (this morning I guess) and couldn't fall back asleep dye to symptoms which sucked, a lot and vision when trying to read this (even using the stover bifocal part) and with the screen enlarged is out of focus (blurry I guess) so that sucks. I reallllyyy like reading so frustrating when this occurs! It's actually like the symptoms are slowly coming back, it was a sudden onset of all of it, which I think has often been the case (slower onset vs sudden).
Dr.Bragg and I where talking about possible replacements for her (she told me about the Dr coming from Canada who will come in Aug. or as well about a former Resident now on the Adult side she thinks may be a good fit).
The former Resident is at least familiar w my care, issues and presentation so she thought that might be a good fit as he's been in on some of my surgeries.
She also talked about the new Dr coming from Canada (I am asking around with Canadian friends to see if any know him from their own kids and if so what they think.
It turns out though the new guy from Canada is a Fellow just finishing which I am not opposed to, I tend to think the young docs, newly out of training or fairly new (as was Dr.Bragg's case and the case with many of my current Providers, my Cardiologist for instance was only a few wks out of his Adult Cong. ♡ Fellowship at Mayo and at CHW maybe a month when I 1st started seeing him. My PCP wasn't in practice to long either when I 1st started seeing her and sane w a few other of my Providers. In all honesty about 1/2 my Providers are very young and 1/2 are by no means older but had a little more experience and then a couple that where in practice linger when I 1st started seeing them.
I think a mix isgood and as pts especially very rare disease pts we have to be willing to train new Dr's bc the 'experts' certainly don't seem to be Doug it. Even if our Dr's (or my drs) only sees me and 1 o2 other pts w MPS in their lifetime or practice at least they've seen it.
So an upside to the former Resident is he knows my case and I'd imagine knows the Stealth guided machine Dr.Bragg and her Partner use but then means new overall Team (Nurses, Secretary, etc). -
I did ask Dr.Bragg since yesterday after thinking about this all some and a Mom (her daughter doesn't have MPS or a shunt but she does know rare disease and she's a former Researcher so she knows this world and needing to find good drs) suggested I ask Dr.Bragg if she thought I might be able to see the now attending/former Resident but could i still keep Dr.Bragg's Team (NPs, Nurse, Secretary) given they are so familiar w the many facets of surgeries (other Providers involved (Cardiology, Endocrine, PCP), how to order Aldurazyme, INR mngmt, etc.) and Dr.Bragg seems to think it might be an option. That now Attending/former Resident is on the Adult side and Dr.Bragg's Team is in the Peds side so I'm not sure hospital would work but worth trying to find out, right if it might? Never hurts to ask and check?
I guess she'll talk to all of them and her and I will talk when I see her next and we'll keep figuring it out? I am glad we have time and yet wish we could slow time! I do think she'll help if needed after she moves but really I still wish she:where going to be here! If only the hospitals and ruracracy (sp?) weren't so backwards.
Dr.Bragg's NPs, Nurses and Secretary are phenomenal about working w my PCP, Endocrine and Cardiology Teams + Genzyme and Insur. Case Manager regarding surgery needs, knowing how to order Aldurazyme when in-pt and many other little things so I am hopeful maybe this could work.. I admittedly only remember the resident a little (but that's part for my norm, I am not great at remembering people after i've not seen or talked to them for a while.
The former Resident/now Attending has great reviews by friends of me whose kids also have complex needs and thus also frequent hospital or surgery stays and interaction. That's a good thing :) 1 compared his personality to being a lot like Dr.Bragg's which also wouldn't be a bad thing, she's not a 'let people walk all over her ' kind if person but she's fair, cares, thinks outside the box (absolutely what I look for in all of my Providers) and she's persistent/believes me vs when it's not clear cut she doesn't just assume I'm making it up (I like her but I'd really actually rather be somewhere other than in any of my drs offices asking for help).
Sometimes a Dr's Team means as much as the Dr. does to make things go smoothly..Do I want to start that all over? I honestly don't know. So is it more of a potential upside to go w a new Dr but her Team still be there and familiar w my care? (If it doesn't work out keeping her same Team but the former Resident as my Surgeon), I honestly don't know yet..
Dr.Bragg also said she would have privileges at the Adult Hospital in AZ and a few other of her pts are considering following her. I wouldn't move to AZ but do have a friend whose son has MPS I to who they go to Phoenix Children's and has said if I ever wanted to come see Dr.Bragg I could stay with her.
I know I couldn't see Dr.Bragg as my sole Neurosurgeon, it just wouldn't make sense but perhaps once a yr she could overall manage? I don't know if that makes sense either but perhaps a thought.
She suggested something along that line (seeing her out there), I guess many this to figure out and in time it will sort out.
On a cute, unrelated note Dr.Bragg has gotten to know my nephew (Zander) some through my being in-pt and Z's love of coming to visit. Dr.Bragg made the comment she would miss Zander, I think that little boy has a great fan in her =)
On a different note we where talking about her Partner I think more in the setting of if I went with the new Nrsgn her partner managing my care in the mean time (believe me I'd try my hardest not to need to), I am sure he's good at what he does and I know he's helped her plenty in my surgeries but I also know his and my personalities dont mesh well and hard to get past the many things he's said to me over the yrs about my shunts/not having an awareness of my MPS (as the cause for the Hydrocephalus) and that MPS then even causes Hydrocephalus for some.
Like I said I know he's a good Nrsgn just (and she's probably right though I don't get that very 1st encounter before she was there) that my issues just make him feel uncertain or weary...
I dont always get when people are being sarcastic (and will be the 1st to say as much) and maybe that's just what his attempts where over the past almost 5yrs i've been seeing her? Attempts to be sarcastically funny about how complex my care is and needing Dr.Bragg's help? Who knows, I guess I just like People and Providers especially who say things fairly black and white and (especially if we don't really know each other) I wouldn't say things that if that was the attempt that could be misconstrued...
On a different note Dr.Bragg tapped both shunts which she got some fluid off each, not a lot but some fluid so those seem to be working I guess. That is good but so frustrating (I know my body) the symptoms are classic shunt/pressure occurring worse at night/morning improving greatly to virtually nothing as the day goes on.
She did use the reprogrammer to double check both shunts where at the correct settings (each set at '30', lowest, India best draining the most amount of fluid) and those I think where OK but I also am not certain, actually. I don't know with the Codman reprogrammer if it can tell them what the settings are currently at, prior to being reset? Not sure but so far the symptoms came back some hours after we took off some fluid.
She did offer to tap the shunt(s) (I assume just the 1) and take off fluid again next wk. Not that I really want to have to have her help again, I really like Dr.Bragg, I really like all my Providers but I'd prefer to not need their help!
It honestly seems unlikely as I've never had a correlation before but taking off fluid today helped some, but I can't help but wonder 1. regardless if that's all we could get off is/was it not enough (but it really was all we could get off both shunts) or 2. and this is what seems less likely as it's never been the case before (even when we've had better control of HR such as w the Ivabradine, HF/HR med) and only had 1 shunt in place for those months and other times we had 2 shunts in place for instance headaches where still on/off is HR affecting symptoms?
I honestly don't think the 2 are related as when we do get HR down, such as when I was being paced by the external Pacer after the OHS in Jan. I had the return of headaches then. This said could /does overly fast HR affect the shunts/headaches? I don't think so given it never seemed to in past but I don't know?
I see my Cardiology Team next wk and am going to ask many questions about why Heart Rate has been so difficult to get under control (ranges 100s to 140s mostly since this last OHS, was more high 80s to 100s prior) and even a new med (Ace Inhibitor) since tjid last OHS in addition to the others I was on pre-OHS, re-added) and could that affect headaches and if so what else can we do? Even if it doesn't affect the headaches (my Cardiologist didn't really seem to think so in the past if I remember right) what are options we have to get HR down?
I am tired of meds that aren't seeming to work being perfectly honest. I also am a tad worried about these headaches and not getting them back under better control before Dr.Bragg leaves end of May!
If I'm really honest, honestly it confounds me how the shunts are sooooo good when we 1st put them in then something occurs, say the OHS or an occlusion on other occasions and is never as good again till complete (total) shunt replacement is for some reason. I'm not advocating that I just often wonder is there a reason with MPS that complete shunt replacement seems to give better relief than partial (say just a valve) replacement does?
I guess it really doesn't matter right now as we're not headed to any revision but just something I've often wondered when dealing with a shunt seeming issue and I know a question many other MPS-Shunt Parents (whose kids have shunts) wonder to.
I need to remember to ask Dr.Bragg next wk, if we should do MRIs before she leaves.
I actually strongly dislike them (laying flat and still) but know MRIs are typically done/recommended every 1-2 yrs w MPS I pts and suspect my Genetics Dr in Boston will suggest them. I see him in April so not sure.
Unrelated but related I have been having hip pain at night which in the past has been low back related, related to shunt. That lokebso many tings though, who knows, is never clear and not as bad as it has been other times. More just curious and a trying to sleep/be comfortable on top of the headaches
Anyways I guess in general related to trying to make a plan re Dr.Bragg moving I don't know, I want to slow down time bc I don't want Dr.Bragg to leave but other things I am looking fwd to in Spring.
I know Dr.Bragg knows my issues/presentation (peculiarities perhaps?) and how to help and being perfectly honest no matter which of the 2 Dr's I'd choose will either think outside of the box like she does? Have I ever said I don't really like change (atleast in Providers who are good and get my issues )? - To hard!
Anyways, thanks for stopping by, will try to update after next wks Cardiology Appt.
Next wk is a little weird as I infuse later in the wk (scheduling per the clinic) and see Cardiology Tues, Dr.Bragg on a non-clinic day Weds.
Thanks for stopping by,
Erica
Ps the 2nd picture is part of a comment from 1 of my closest Providers, she is intimately involved in my care and been involved in many of the lead up to Shunt revisions, making surgeries w Dr.Bragg happen and coord. care happen.
I don't think and yet I know Dr.Bragg's leaving UW has left many of my Providers uncertain in how to replace her and quite aware how well she's made my care flow. It's neat been neat knowing how much Dr.Bragg has impacted not just me but how many comments I've gotten from other Providers (both prior to knowing she was leaving and since) that they've really appreciated her communicating with them and her as a whole not giving up, helping them when needed and her belief I'm me. AZ is lucky to get her and I know I'm not the only one both Patient and from,Providers if mine who thinks that and is sad to see her leave come May!
I don't often share things my Providers write to me but this was worth sharing bc she's made an impact not just to me.
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